Our beloved Carol died today, June 24th, 2005, from ALS. She passed
away quietly in the early evening, surrounded by her sister Anne, her best friend Katey
Strollo, her husband Paul, and her parents, Jan and Ted. Her fight with ALS lasted less
than a year, but the grace, humor, and strength with which she fought will be forever
There will be a memorial service for Carol at
First Congregational Church in Ithaca, NY at
2:00 on Sunday, July 3rd. Carol's husband requests that those attending
wear bright colors to honor Carol's memory, and help us all to celebrate her life. Please
also consider a gift in Carol's memory to The ALS Association (alsa.org) or Carol's
Thank you all so much for your love and support of Carol and our family.
Carol continues in a more or less unconscious state. She is being routinely cleaned to
avoid bedsores, which have so far been mercifully absent. She is being watched round the
clock by Annie, Paul, Mom, and Dad. Several other friends are helping for prolonged
She has had two more near-death episodes, but recovered dramatically after each. It's not
really clear what she's going through. The hospice nurse feels that this progression is not
unusual and doesn't believe that Carol is in any great discomfort. She seems peaceful.
She is receiving low-level morphine to help reduce anxiety.
Carol had a rough morning and it looked like she might go. She recovered and appears to
be comfortable although there is now no way at all to communicate with her.
Olivia and I went to Ithaca on June 13th to visit Carol and the rest of the
Buckley family. Despite the sadness of knowing this was probably the last time I would
see Carol, we had a really wonderful four days.
Carol looks beautiful. Her skin is flawless, her hair long and soft, and her eyes still
sparkle. Her feet have been massaged so regularly that they feel like Olivia's. What is
noticeably different from the last time I saw her, which was her birthday party in March,
is that she can no longer sit up by herself, and she has no strength left in her neck. She
lays back in her recliner with pillows to help support her head, and she needs someone to
periodically adjust her neck. She is using oxygen full time now. A new medication has
helped her excess saliva problem quite well, and now she only needs suction every fifteen
minutes or so.
Carol can still smile. On Wednesday, Katey Strollo, Carol's sister Anne, Pat the
Hospicare nurse (who is a phenomenal nurse and companion to Carol, and to whom we
are so grateful for her exceptional care) and myself were visiting Carol. Anne rubbed her
feet, Katey and Pat rubbed each of her hands and arms, and I gave her a scalp massage.
During all of this rubbing, we told funny stories, and all of us laughed quite a bit. Carol
laughed along with us, and was very much a part of the conversations, and contributed
using her Plexiglas letter board.
Carol tires easily these days though, and has been sleeping much more often than she
used to. We have been informed that this is usually a sign that she won't be with us
much longer. Predictions from the Hospicare staff have ranged from days to a few
weeks. I said goodbye to Carol, which was incredibly difficult. I am grateful, however,
that I had that chance to tell her how much I love her, and how honored I am to have
known her. Carol truly welcomed me into the family when I first married Eric, and has
been both a friend and a sister. I made a vow to her that Olivia would grow up knowing
her through her pictures and music, and the legacy of kindness and strength she will leave
Carol is a real Diva now. She had her first set of Botox injections
yesterday. Now she has the prettiest salivary glands on the east coast. ;)
Seriously, the visit to the Syracuse hospital went very well. We were in
and out in probably 30 minutes. Carol never even flinched when they gave
her the injections.
Dr Sheffner says we should be able to see results in a couple days or
less. Like all procedures there are no guarantees, but were hoping for the
The last couple weeks things seem to be going much better. Carol is using
the communication device more, and her speed is improving, Paul seems more
rested, and everyone seems to have a better sense of what their "role" is
so there are fewer last minute crises to deal with.
Not much else going on - Al and I are looking forward to spending a day
this weekend searching out yard sales and chicken bbq - our standard
anniversary celebration. It's amazing how much fun you can still in a day
have with a tank of gas and a handful of quarters.
Cheers! Anne :)
Carol is still remarkably upbeat. Her voluntary movements are pretty much limited
facial expressions and slight movements of her forearms and thumbs. This is
enough to communicate, albeit very slowly, via an alphabet board.
On the board, letters are grouped into sets of 4. She looks at the set she wants
and the translator points to where they think she is looking. She gives a slight
nod or thumb movement to acknowledge. Then she looks at the corner of the
board to indicate which of the four letters in the set to choose. It's tedious,
but it does work.
Her biggest problem is the constant drooling that comes from loosing her ability to swallow.
She told me her new slogan is "Love me, love my drool." She took some
medication that was supposed to help with that, but it didn't seem to
do much and had some nasty side effects. Another option is botox injections,
which would work, but she wouldn't be able to smile. Carol is reluctant to
give that up since it's about the only thing she can still do.
Hi all - just a quick update on little sister. Yesterday the folks from
Hospicare stopped by and spoke with Carol about a few days stay at the
Hospice center. As you can imagine Carol was NOT keen on this idea - in
fact she still sleeps in a recliner because the adjustable bed reminds her
too much of what is to come. However, a few days ago I hurt my back
(moving crap at my place, not lifting Carol), but every day I continue to
assist her in and out of the wheelchair, my back gets worse instead of
better. Between my begging her for a few days rest so I can heal and the
folks from hospice assuring Carol that all her friends could visit her
there she finally agreed.
Today Paul and I will take her up and will stay with her until other
friends of hers arrive later this afternoon. This evening a small chorale
group will be coming to sing for her, and I'm sure they will entertain the
others at Hospice too. Carol plans to stay at Hospice until Sunday. Paul
will stay there with her too. During these few days my hope is that Paul
is also able to get more rest since nurses will be able to assist Carol,
and he can be husband again instead of primary caregiver.
My switch to halftime is working well right now - I come in to the office
from 8am-10am, then scoot down to Carols for a few hours while Paul comes
to work, then I return to Cornell around 3pm to follow up on anything that
came in during the day. Fortunately April is a quiet month here. Also
Carols friend Gerard will be off for the summer (he works at Ithaca
College) and has offered to help out days.
We think we are much closer to getting a communication device for Carol - a
loaner may be here as soon as this afternoon, and the bureaucratic wheels
are slowly but surely turning to get funding for her own unit. Her
handwriting is nearly illegible now by the end of the day so the
availability of the loaner is very good news.
I'm a bit groggy just now - I stayed with Carol last night so Paul could
get a nights rest. I still had to get him up at 3am so he could assist
with a bathroom visit, but other than that I think he slept well - at least
better than many other nights when he is alone and sleeps "with one eye
open". Carol also looked rested this morning so I think their trip up to
Hospice today should go fairly smoothly.
Sorry for the infrequent updates - bits of time move so slowly now, with
the simplest of tasks taking 20-30 minutes to complete, yet the days pass
quickly - I'm not sure even Steven Hawking could explain this oddity.
Cheers! Anne :)
Carol is back out of the hospital, having had a feeding tube installed.
Normally, this is an easy operation, but Carol got sick from some of the medication,
so she had to spend a few days in the hospital. She's happy to be back out and
her spirits are still pretty good.
The conversion of the bottom floor of their house is pretty much complete. The
dining room has been converted to a bedroom and the new bathroom is done except for some
painting. From a living space perspective, it's not that much worse than what they
had when they lived in their 1-bedroom apartment.
This is probably a little out of date. We'll have an update after the party.
Carol is now completely wheelchair bound. They've ordered an electric wheelchair,
but are currently making do with a loaned push model.
The conversion of the bottom floor of their house is progressing. The downstairs
bathroom was roughed in over a weekend in January by Paul's brothers. The finish work
is still ongoing. The Congregational Church built a ramp so Carol can get in
through the back door using the wheelchair.
A support group has been established to help. Many people volunteered. While all the
help is much appreciated, the bulk of the caretaking is still falling to Paul and Anne.
The general consesus is that it's time to start looking for hospice
Carol is still primarily using the whiteboard to communicate. While slow, this does give
her the ability to communicate her basic needs and get off the occaisional one-liner.
Her spirits are remarkably upbeat, although the strain is clear both on her and those
closest to her.